Last week was the toughest yet, but bearable; mainly because now I'm on holiday until after Easter! It was a hard week because I had to get all the papers ready to send out for the Assets and Finance Committee and I wasn't sleeping properly.
The ribavirin is making me agitated, which is stopping me from sleeping, even though I've been exhausted. Being both agitated and exhausted is pretty uncomfortable. Through the working day I've been confused and forgetful. I've been making little notes of what I'm doing, setting up a breadcrumb trail to keep me going the right way. Cups of tea have gone cold un-drunk, I've been dropping things, banged my head, and generally been stupid and clumsy.
Every time my boss has asked me how I'm doing I've said "I'm tired but ok". He's going to get fed up of hearing that a long time before I stop saying it.
I emailed my Hep C nurse in the week to ask for my starting viral loads and the results of last week's blood test. I also asked if it would be ok to do my week 4 viral load tests next Friday, (which is 4 weeks exactly after I started treatment), rather than tomorrow, Monday, so that it's an accurate indicator of my reaction to the interferon. He hasn't come back to me. I'm really disappointed, but not surprised. I'm seeing him on Tuesday, and I think he's got too much to do to give me that level of support. I can't be too cross; I'm so grateful to get this medical treatment free on the NHS. They have to do a lot with the resources available. But, motivation is going to be one of the big issues on this treatment I think, and it would be motivating for me to be able to keep up to date with my test results, to monitor my progress and see how I'm doing.
By the end of last week I felt pretty low and that 48 weeks was impossibly long. Since then, being on holiday, I've been able to sleep whenever I've felt like it, and am now cheerful. I'm still going to the gym on Fridays, swimming on Sundays and yoga-ing on Mondays, which is keeping my energy levels up. My heart was doing a weird tremulous thing after swimming last Sunday though, so I did ten fewer lengths today. I've stopped drinking tea or coffee after 11.00am, which has helped a bit with in reducing the agitation.
Other side effects so far, my gums are sore, though I'm cleaning them diligently and flossing and using mouthwash. The rash on my hands has gone, the Aveeno has taken care of that, but the rash on my knees is getting worse.
I have decided on my Boceprevir routine. I'll be taking my pills at 9.30 pm; 5.30am and 1.30 pm. I've been experimenting making healthy biscuits to have with milk with my evening and night time doses. These apple and cinnamon breakfast biscuits are pretty good, especially with extra cinnamon and seeds.
This week coming up I've got the blood tests on Monday, so the results are back for my appointment at the hospital on Tuesday afternoon. On Wednesday I'm going to see a friend for lunch. Thursday, I might get my hair cut, and if the blood test clinic is shut on Friday (because of the easter bank holiday) I need to get my viral load test on Thursday too. Then on Friday I've got a personal training session at 10.
I start taking Boceprevir on Friday, which I'm very excited by. Well, it's the big thing in my life at the moment. I'm worried that it's going to make me sick though, as in vomit-y sick, especially as it will be a bank holiday weekend, so I'm not going to be able to get any help until Tuesday most likely. One of the women on the forum said she wasn't abel to keep any food down for 10 days after she started. Gurgh!
I am going to try and persuade the nurse to give me a prescription for Zofran, so I'm prepared. Are they allowed to issue pre-emptive prescriptions? I'll find out.
Other things I'd like to do this week: - plan my future over the next few years. I'm worried about having enough money to have a baby, and feel like I've been avoiding the problem as being 'too hard'. Cos it is!
Take care, have a good week.
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